About JHS/EDS

What is Joint Hypermobolity Syndrome?

Joint Hypermobility Syndrome (JHS) is a connective tissues disorder that results in joints being able to move beyond the normal range. This is due to a defect with the collagen in the body making the ligaments very loose and therefore the joints very bendy. For some people they only have hypermobile joint with no other issues and therefore just have joint hypermobility. For others they also suffer from chronic pain and fatigue as well a other symptoms. These people have joint hypermobility syndrome.

What are the characteristics of JHS?

The most obvious characteristic is hypermobile joints. These people are often good at gymnastics and ballet due to their flexibility. But it means they are also more prone to joint disolcations.

Being diagnosed with JHS does not mean you will have all of these symptoms. These are just some that can occur and will vary considerably between individuals.

So how is JHS diagnosed?

JHS is usually diagnosed by a specialist (genetists, rheumatologist, paediatrician) often after ruling out neurological, muscular and genetic issues. They use the Brighton Criteria which includes the following:

Is JHS the same as Ehlers Danlos Syndrome Hypermobility Type (EDS)?

That is very debatable. The characteristics are almost identical and therefore many specialists these days believe they are actually the same condition. Some believe that if there are no issues with the heart then it is JHS and not EDS. And others believe that JHS is a milder version of EDS. However, I do not totally agree with that as I know of kids with who have been diagnosed with JHS who need wheelchairs (including miss Rapunzel).

We have come across all types of doctors. Originally we were told that we has JHS because even though we were bendy, our bruises were bad but not bad enough, our skin was very stretchy and like velvet, but you guessed it not quite enough. And because (fortunately) we did not have a mitral valve proplapse or any other cardiac issues. So JHS it was.

Since then other specialists have told us that they felt we did have EDS because in their opinion we were bad enough in all those other areas.

Talk about confusing.

But really on a day to day basis it does not really matter which name the syndrome is given. Therapy and treatment is the same for both to treat the symptoms and help those affected by it achieve the all they can.

It is when those affected are seeking funding assistance (be it from the government, insurance companies or funding bodies) when it can matter. So hopefully one day soon the medical profession will determine if in fact these two diagnosis are the same.

Is it hereditary?

It can be. Research has shown that is is probably an inherited genectic condtion. However, having JHS does not mean that your children will have JHS aswell. None, some or all of your offspring maybe affected aswell.

Since the medical profression is not exactly sure which genes cause JHS that can not accurately determine who will be affected by the condition. more research is needed in the area.

So what treatment is availble?

Since JHS has no cure treatment focuses on managing the symptoms. Physiotherapy (or Physical therapy) is very important for improving muscle stength, core body strength, endurance and propriocpetive skills. Hydrotherapy is a great why to build endurance and fitness levels whilst decreasing the impact on the body.

Occupational therapists are often involved to help make everyday life easier for those affected by JHS. This can included teaching people about energy conservation and task modification, providing adaptive equipment, assisting with house modifcations and prescribing wheelchairs.

Occasionally speech therapists are involved to help with articulation issues adn swallowing issues.

Pain management is also vital otherwise it can beomce very overwhelming and have a significant impact on everyday life. This is sometimes managed by the GP, other times specialists and specialised pain management teams.

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About

I'm Rebecca, author, creator and designer of DancingDaffodils. I am a stay at home mum who is on a journey back to the simple things in life. I love being a wife and mum, a daughter of God. You will always find me creating things and trying to raise awareness about JHS/EDS. Come and join our journey and rediscover life's simple pleasures.